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Monday, December 11, 2017

Race, Parental Concerns, and Age of Diagnosis

In The Politics of Autism, I write about the experiences of different ethnic and racial groups.

A release from Georgia State University:
Racial differences in parents’ reports of concerns about their child’s development to healthcare providers may contribute to delayed diagnosis of autism spectrum disorder (ASD) in black children, according to a study led by Georgia State University.
The study found that compared to white parents, black parents reported significantly fewer concerns related to symptoms of ASD in their children with the disorder. Black parents were less likely than white parents to report concerns about two ASD symptoms – social deficits and restricted and repetitive behaviors. The findings are published in the journal Autism.
Many parents begin reporting concerns about ASD during the child’s first two years of life, and on average, children are diagnosed with ASD around their fourth birthday. However, black children are diagnosed with ASD at older ages than white children and children of other races. They are also nearly twice as likely as children of other races to be misdiagnosed with disruptive behavior disorders before receiving an ASD diagnosis.
The abstract:
Autism. 2017 Nov 1:1362361317722030. doi: 10.1177/1362361317722030. [Epub ahead of print] Race influences parent report of concerns about symptoms of autism spectrum disorder.

Donohue MR, Childs AW, Richards M, Robins DL.

Racial differences in parent report of concerns about their child's development to healthcare providers may contribute to delayed autism spectrum disorder diagnoses in Black children. We tested the hypotheses that compared to White parents, Black parents of children with autism spectrum disorder would report fewer concerns about autism symptoms and would be more likely to report concerns about disruptive behaviors. A sample of 18- to 40-month-old toddlers ( N = 174) with autism spectrum disorder and their parent participated. After screening positive for autism spectrum disorder risk, but prior to a diagnostic evaluation, parents completed free-response questions soliciting concerns about their child's development. Parent responses were coded for the presence or the absence of 10 possible concerns, which were grouped into autism concerns (e.g. social and restricted and repetitive behavior concerns) or non-autism concerns (e.g. general developmental and disruptive behavior concerns). Compared to White parents, Black parents reported significantly fewer autism concerns and fewer social and restricted and repetitive behavior concerns. However, Black parents did not report significantly fewer non-autism concerns. Race did not influence parent report of disruptive behavior concerns. Lower reporting of autism concerns by Black parents may impact providers' abilities to identify children who need further screening or evaluation.

Sunday, December 10, 2017

Autism, Diagnosis, and Immigration

 In The Politics of Autism, I explain how the issue connects with so many other issues.  Immigration is an example.

Emily Sohn at Spectrum via Scientific American:
[Cultural]  complexities, experts say, make it difficult to interpret the evidence that certain immigrant communities have an unusually high or low prevalence of autism. As some researchers dig into possible explanations, from stress to environmental factors, others say the true issue may be societal: a mix of diagnostic challenges, communication barriers and culture clashes that lead clinicians to misdiagnose or miss children on the spectrum in these communities.

Some teams are trying to develop or assess screening tools tailored for certain ethnic groups in the U.S. and elsewhere—for example, a picture-based tool for use in Sri Lanka—and these efforts may lead to more accurate numbers among different populations. If the figures reveal true differences in prevalence among these communities, they might offer clues about the potential causes of autism. The vast majority of research on autism today, after all, is limited to mostly white and middle-class families. At the very least, getting a better handle on prevalence may help identify populations with the greatest needs for culturally adapted services.

“What’s important is that kids who have autism get identified early and access high-quality treatment,” says Katharine Zuckerman, a pediatrician at Oregon Health and Science University in Portland. “I think we do a pretty poor job of that in this country, especially if you look at the most evidence-based treatments for autism—only a small fraction gets that. And immigration influences the ability to access those things.”
...
Fixing flawed prevalence rates in immigrant communities calls for screening tools that have been adapted specifically for these families. The translations available so far often miss the cultural mark, however. One meta-analysis of 21 studies assessed the translation of nine widely used screening tools for autism, including the Autism Spectrum Screening Questionnaire, into eight languages, including Arabic. The results exposed a web of complications and altered meanings. Some translations changed questions and, in the process, altered the cutoff scores for diagnosis. For example, a Japanese version of the popular Modified Checklist for Autism in Toddlers (M-CHAT) had to take into account reluctance among parents in Japan to answer “yes” to yes-or-no questions, and a tendency to interpret their child’s lack of interest in other children as mere shyness. In some countries, including Mexico, it is rude to make eye contact or point with your index finger, and questions about both behaviors often show up on screening tools. Parents from various cultures also have different expectations about how their children should behave, research shows. Those differences include when parents think children should reach developmental milestones and how important they think it is to talk to their children.

Saturday, December 9, 2017

Civil Rights, Disabilities, and the School-to-Prison Pipeline

In The Politics of Autism, I discuss the educational and civil rights of people with autism and other disabilities. 

The name of the session, "The School-to-Prison Pipeline: The Intersections of Students of Color with Disabilities," offered a clue to the stance of some panelists who spoke before the bipartisan commission: That too many students with disabilities are being placed in special education, and once there, they face punitive discipline that puts many of them on a rocky path to incarceration.
"We can't afford to ignore this problem," said Eve Hill, a former deputy assistant attorney general in the Justice Department's civil rights division. "We're wasting the talents and skills of tens of thousands of children every year."
But that wasn't a view shared by every panelist, nor by every commissioner. Peter Kirsanow, the only Republican on the commission, said that efforts by the federal government to reduce suspensions and expulsions have led to "unlawful quotas." He also asked if keeping disruptive students in school had a negative impact on the students who remained.
"The most vulnerable cohort would be students with disabilities," Kirsanow said, referring to other research on the high rates of bullying toward students in special education.



At US News, Lauren Camera reports on DeVos's review of Education Department rules.
Two of those regulations are at the heart of the current civil rights spat.

The first is a 2014 regulation aimed at stemming the school-to-prison pipeline by prodding schools to reduce the number of suspensions and expulsions of students of color and students with disabilities, both of whom receive such disciplinary actions at disproportionately high rates.

According to the Department of Education's Office for Civil Rights, among the 2.6 million students suspended each year, black boys are three times more like than white boys to be suspended, black girls are six times more likely than white girls to be suspended, and students with disabilities are more than twice as likely as their peers to be suspended.

The second regulation, issued in 2016, established a more standardized method for how states calculate the threshold at which the percentage of black students classified as disabled becomes a "significant disproportionality" – a benchmark that triggers mandatory spending requirements for a portion of federal funds a district receives. The goal of the guidance, which is set to go into effect for the 2018-2019 school year, was to create a way to better monitor the long-held notion that students of color are identified as having learning disabilities at a greater rate than white students.

DeVos has not signaled whether her department is leaning toward repealing the regulations entirely, but she recently met with critics of the 2014 school discipline guidance and also recently published in the Federal Register a notice seeking comment on whether or not the compliance date for the 2016 regulation should be delayed until 2020.

Friday, December 8, 2017

ABLE Update

The Politics of Autism includes a discussion of the ABLE Act.

From the ABLE National Resource Center:
December 4: Today, the ABLE National Resource Center (ANRC) hosted a congressional briefing at the Russell Senate Office Building in Washington, D.C. The event provided Members of Congress and ABLE related stakeholders with a progress report on the Stephen Beck Jr., Achieving a Better Life Experience (ABLE) Act implementation nationwide. To date, more than 30 states have launched ABLE programs.
The briefing shared key information about ABLE account owner demographics, number of accounts opened, contribution levels and other significant data points. Attendees heard from two sets of distinguished panelists who shared ABLE success stories, examined implementation challenges and looked into the future with respect to legislative recommendations to strengthen ABLE.
The briefing was hosted by the ANRC, sponsored by Senator Robert “Bob” Casey, Senator Richard Burr, Representative Pete Sessions, Representative Tony Cardenas and Representative Cathy McMorris Rodgers, in collaboration with the Consortium for Citizens with Disabilities (CCD) Financial Security Taskforce and the National Association of State Treasurers (NAST) ABLE Committee.
During the nearly three years since the ABLE Act enactment, a tremendous amount of work has been done on the local, state and federal levels to ensure that ABLE eligible individuals with disabilities have the opportunity to build a sound financial future, without jeopardizing their eligibility for various supports and services provided by means-tested programs.

Slides from the briefing can be found HERE.
The agenda from the briefing can be found HERE.

Thursday, December 7, 2017

Problematic Representations of Autism

In The Politics of Autism, I write about misperceptions of people on the spectrum:
Some may confuse autism with intellectual disability and subject their autistic students to what President Bush called the soft bigotry of low expectations. Others may believe in the “Rain Man” myth of savant abilities and conclude that poor performance on a math test can only mean laziness or defiance.
The same holds true in the working world.  Michael Bernick at Forbes:
David Platzer is an anthropologist of autism employment (profiled earlier this year) who is deeply involved in trying to create new employment opportunities for adults on the autism spectrum. Platzer explains:
"Pervasive popular culture representations of autism as entailing savant or savant-like skills, such as Atypical and The Good Doctor, can create real problems for those of us working to promote employment for folks across the autism spectrum. When employers or potential employers equate autism with genius and mild social eccentricity, they are not adequately prepared for the patience and dedication that working with a broader autistic population often entails. In many ways, the representations of autism we see in Hollywood are actually setting the community up for failure. And this is especially so for those who experience more significant challenges."
Platzer is spot on. In 2017, autism employment initiatives throughout the country have continued to grow in autism-focused small businesses, autism self-employment and internet-based creative collectives, and autism-targeted hiring efforts in major companies. But it has been a slow process this past year, in part as the reality of autism employment has conflicted with the idealized versions held by company officials.

Wednesday, December 6, 2017

Collett Statement


Now, I expect that we will talk about a number of things today, and I’m looking forward to responding to your questions. But I want to be honest about something from the beginning. . . Regardless of the particular matters at hand or the specific issues that we may discuss, the lens through which I will process and respond to your questions will be that of the child, the student,or the adult with a disability, and what will ensure that they have an equitable opportunity to be successful. While we all – individually and as a nation - have a stake in the success of children, youth, and adults with disabilities, no one has more of a stake in their success than they do. This will be my lens today, and each day that I serve in this role, if confirmed.
Before I began my career as an educator, I was a church pastor for about ten years. While a different role, to be sure, it was during those years that my commitment to individuals, their particular strengths and diverse needs, and the supports that would help them achieve the life they envisioned, was firmly established. That commitment continued to be shaped as I began my career in public education. I came into the teaching profession through an alternative route. In fact, I began my education career as an emergency certified teacher. I quickly achieved full certification and have continued since then to be guided daily by a growing and intense focus on individuals with disabilities and their families, their strengths and needs, and how we best support them to achieve the outcomes that we, and most importantly they, envision.

Tuesday, December 5, 2017

School Choice and Information for Parents

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

From the Government Acountability Office:
States include different academic, administrative, and financial accountability mechanisms in their voucher and education savings account (ESA) programs—programs that use public funds for private school educational expenses (see figure). Of the 27 programs operating in January 2017, most had academic and administrative accountability mechanisms for participating schools, such as academic testing requirements (18 of 27) or health and safety requirements (25 of 27). In addition, 15 of 27 programs required schools to demonstrate financial soundness and 8 of 27 programs required annual financial audits.
Key Academic, Administrative, and Financial Accountability Mechanisms in Private School Choice Programs
Almost all of the 27 private school choice program websites provide a directory of participating schools and some provide guidance on selecting schools. However, GAO estimates that no more than half of all schools participating in any type of voucher program mention students with disabilities anywhere on their websites, according to GAO's review of a nationally generalizable sample of websites of private schools in voucher programs. Further, GAO estimates that no more than 53 percent of private schools in voucher programs designed for students with disabilities provide disability-related information on their websites.
GAO found private school choice programs inconsistently provide information on changes in rights and protections under the Individuals with Disabilities Education Act (IDEA) when parents move a child with a disability from public to private school. In 2001, the U.S. Department of Education (Education) strongly encouraged states and school districts to notify parents of these changes, but according to Education, IDEA does not provide it with statutory authority to require this notification. According to GAO's review of information provided by private school choice programs, and as confirmed by program officials, in school year 2016-17, 83 percent of students enrolled in a program designed specifically for students with disabilities were in a program that provided either no information about changes in IDEA rights or provided information that Education confirmed contained inaccuracies about these changes. Officials from national stakeholder groups, private choice programs, and Education told GAO that some parents do not understand that certain key IDEA rights and protections—such as discipline procedures and least restrictive environment requirements—change when parents move their child from public to private school. Ensuring that quality information is communicated consistently and accurately to parents can help address potential misunderstanding about changes in federal special education rights.
...
What GAO Recommends
Congress should consider requiring states to notify parents/guardians about changes in federal special education rights when a parent moves a child from public to private school. In addition, GAO recommends Education review and correct inaccurate IDEA-related information provided by states. Education generally agreed with our recommendation.
For more information, contact Jacqueline M. Nowicki at (617) 788-0580 or nowickij@gao.gov.

Monday, December 4, 2017

Falling Off the Cliff

In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
At the Philadelphia Inquirer, Ronnie Polaneczky has a series titled "Falling off the Cliff."
Parents of adults with I/DD followed Christina's case closely, and they called to share their own horror stories about caregiver abuse and agency incompetence. About political and public indifference to the needs of those with I/DD. About the lack of compassion and resources for elderly parents who have become too old and frail to care for their aging, impaired children. About the sudden elimination of educational options when a disabled child turns 21, a descent so dramatic and universal that parents call it "falling off the cliff."
Their stories could fill a book. But each would only nick the surface of a crisis that is barreling toward us like a tsunami: We will soon have more intellectually and developmentally disabled adults living in this country than at any other time in our history.
Advances in medical care have allowed kids born with Down syndrome, for example, to live twice as long as they did just 20 years ago. And the explosion in the number of children with autism -- one in 68 children are now diagnosed -- means we'll soon have a vast population of adults in need of services like those Christina's family had hoped would keep her safe.
Add these numbers to those of children born with the two other most common roots of intellectual disability -- Fragile X syndrome and fetal alcohol spectrum disorder -- and we have a looming social, economic, and moral crisis. What will we do about, with, and for these vulnerable adults and the families who struggle to care for them? And how much are we willing to pay for it?


Sunday, December 3, 2017

The Arc v. Senate Tax Bill


From the Arc:
“Today the Senate took a big and dangerous step closer to cutting the services and supports that people with disabilities rely on to be a part of their community.
“The Arc’s longstanding position on tax policy is that it should raise sufficient revenues to finance essential programs that help people with disabilities to live and work in the community. The Arc also supports tax policy that is fair and reduces income inequality; people with disabilities are twice as likely to experience poverty.
“Both the House and Senate versions of the Tax Cuts and Jobs Act fail to meet either standard. By reducing federal revenue by at least $1.5 trillion, the Senate bill turns up the pressure on Congress to cut Medicaid and other programs that are critical to people with intellectual and developmental disabilities.
“Additionally, the repeal of the Affordable Care Act’s individual mandate will have a dire impact on nearly 13 million Americans, including those with disabilities, and will increase premiums for people buying insurance on the health insurance exchange.
“The disability community has fought against threats to vital programs and won several times this year, and we are prepared to do it again. As the House and Senate finalize the bill, we encourage our advocates across the country to act now. We’ve shown again and again this year our strength, and now we have to do it again, or we will be right back where we started in the coming new year,” said Peter Berns, CEO, The Arc.

Saturday, December 2, 2017

Collett Hearing


At Education Week, Christina Samuels reports that the Senate HELP Committee will hold a December 5 hearing on the nomination of Johnny Collett to head the federal office of special education and rehabilitative services. 
A number of special education advocates have had kind words to say about him, including Paulette Logsdon, the executive director of the Kentucky Special Parent Involvement Network. In an email to Education Week, she said she was "delighted" about the appointment. Her organization, also known as KY-SPIN, is a federally-funded parent training and information center. Every state has at least one PTI, charged with linking parents with resources to help them support their children with disabilities.

"Some of us at SPIN have worked with him on individual issues, and as parent center staff. This ranges from his work with the State Advisory Panel, to [individualized education program] development, to transition issues. He has always had us at the table when discussing issues regarding parents or children with disabilities," Logsdon said.
Nancy Reder, who heads government relations for national special education administrators' group, said Collett "is just a thorough professional, very thoughtful, he has tons of experience at all levels."

And Chris Minnich, the executive director of CCSSO, said in an interview that Collett's nomination "is a sign these kids are going to be protected, but also pushed in a way that we set high expectations for these kids," he said. "I think it's a really important nomination, and I'm really proud of Johnny for getting it."

Friday, December 1, 2017

Autism and Medical Marijuana in Minnesota

In The Politics of Autism, I discuss alternative treatments.

From the Minnesota Department of Public Health:
Minnesota Commissioner of Health Dr. Ed Ehlinger today announced the decision to add autism spectrum disorders and obstructive sleep apnea as new qualifying conditions for the state’s medical cannabis program.
“Any policy decisions about cannabis are difficult due to the relative lack of published scientific evidence,” said Commissioner Ehlinger. “However, there is increasing evidence for potential benefits of medical cannabis for those with severe autism and obstructive sleep apnea.”
This year, as in years past, the Minnesota Department of Health used a formal petitioning process to solicit public input on potential qualifying conditions. Throughout June and July, Minnesotans were invited to submit petitions to add qualifying conditions. The process included public comments, a citizens’ review panel and a set of research summaries for each condition prepared by Minnesota Department of Health staff.
Petitioners put forward a total of 10 conditions for consideration this year, including anxiety disorders, autism, cortico-basal degeneration, dementia, endogenous cannabinoid deficiency syndrome, liver disease, nausea, obstructive sleep apnea, Parkinson’s disease and peripheral neuropathy. There were also petitions to add cannabis delivery methods including infused edibles and vaporizing or smoking cannabis flowers. These requests were not approved.
Autism spectrum disorder is characterized by sustained social impairments in communication and interactions, and repetitive behaviors, interests or activities. Patients certified for the program because of autism must meet the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders – 5th edition) for autism. The health department’s autism research brief (PDF) found a growing body of research indicating that the human body’s endocannabinoid system may play a role in autism symptoms. In support of adding autism, the review panel report (PDF) noted the lack of effective drug treatments, the potentially severe side effects of current drug treatments and anecdotal evidence of Minnesota children with autism already receiving benefits from medical cannabis taken for other qualifying conditions.
...
Under current state rules, patients certified to have autism or obstructive sleep apnea will be newly eligible to enroll in the program on July 1, 2018 and receive medical cannabis from the state’s two medical cannabis manufacturers beginning Aug. 1, 2018. As with the program’s other qualifying conditions, patients will need advance certification from a Minnesota health care provider. More information on the program’s certification process is available from the Office of Medical Cannabis.

Thursday, November 30, 2017

A Case for Screening


Zoƫ Kirsch at Slate:
Recent research suggests that, by 2, toddlers can begin to reveal signs of autism: an absence of big smiles or, as in Jonathan’s case, an abrupt loss of speech and a lack of interactive gestures. But most children with autism aren’t identified until after they turn 3 (the median age of first diagnosis is 3 years and 10 months). By then, in most states, kids are no longer eligible for the array of services that Jonathan gets on a weekly basis—a delay that robs them of time that could have been used to catch up to peers.
...

Research shows that black and Hispanic kids are less likely than their non-Hispanic white counterparts to be evaluated before 3, and that, on average, black and Latino children are diagnosed later than their white peers — with a delay of 1.4 and 2.5 years, respectively. Kids who communicate in a language other than English at home are 48 percent less likely than English speakers to be referred to early intervention. It’s a stark example of how children who haven’t even learned to brush their own teeth may already suffer due to the color of their skin or the language that they speak.
...
In 2007, the American Academy of Pediatrics recommended that doctors screen all toddlers for autism at their 18- and 24-month visits, when indicators start to stabilize. Since then, the average age of diagnosis in some communities has dropped by roughly a year and a half, according to a 2016 study by researchers at Albert Einstein College of Medicine in the Bronx.
...
Studies show that kids who start treatment early demonstrate increased social and cognitive functioning which can, in turn, result in more independence. In a recent paper, researchers at the New England Center for Children analyzed gains among dozens of children who began the same early intensive behavioral intervention at ages 1, 2, and 3, and found that those who started therapy youngest saw the most improvement.

...
Early signs of autism can masquerade as the typical struggles that bilingual kids confront when learning a second tongue: The key to distinguishing one from the other is knowing that a bilingual child with a learning impairment will struggle in both languages, not just one.
There is no guarantee of dramatic progress.
A study out of the Bronx found that just 1 in 14 toddlers who received early intervention services improved to the point that they no longer needed services in first grade

Wednesday, November 29, 2017

"National Call-In Day: No Tax on Disability"


From the Autism Society:
Please join the Autism Society and advocates across the country on Wednesday, November 29th for National Call-In Day: No Tax on Disability!
Background
On November 17, the House of Representatives passed its version of a tax bill. The Senate Budget Committee passed their version today. A final vote in the Senate is expected Thursday. Both bills are extremely harmful to people with disabilities. A conference committee may have to work out the differences between the bills, meaning that provisions in either bill could end up in a final tax bill. Both bills are harmful because they:
– Increase the deficit significantly to provide tax cuts that disproportionately benefit the wealthiest Americans and corporations.
– Lead to cuts to Medicaid, Medicare, Supplemental Security Income, and other critical programs for people with disabilities in order to reduce the deficits and debts incurred by tax cuts.
While the House tax bill does not directly cut Medicaid, the actions it takes will have the same or even worse effect on Medicaid and other services and supports for people with disabilities. The House bill that has many provisions that harm people with disabilities and their families by eliminating the following tax deductions and credits:
– Deduction for high medical expenses, which is critical to many people with disabilities and their families
– A $2,400 tax credit businesses can get when hiring someone with a disability
– A $5,000 tax credit for businesses that make their businesses accessible to people with disabilities (Architectural Barriers credit)
– Reduces incentive to contribute to non-profit agencies that often provide support for people with disabilities and their families (charitable giving)
The Senate bill is even worse. It includes a provision to repeal the individual mandate to obtain health insurance. The individual mandate is a central part of the Affordable Care Act (ACA) which greatly benefits people with disabilities by eliminating pre-existing condition exclusions, banning annual and lifetime limits, prohibiting discrimination based on health status, and much more. Repealing the individual mandate will:
– Result in almost 14 million people losing health care coverage (according to an analysis by the Congressional Budget Office (CBO)).
– Increase health insurance premiums for those purchasing coverage on the exchange by at least 10% for the unforeseeable future (also according CBO)·
– The CBO analysis also says the repeal of the individual mandate will save approximately $330 billion (because of the large number that will not be insured) over ten years.
– This money will be used to pay for a making the corporate tax cuts permanent and to cut to the tax rate for corporations and individuals on the upper income scale.
– According to the Tax Policy Center, the Senate plan shows that 87 million households earning less than $200,000 will get a tax increase under the plan
We have a VERY short timeline to stop this very harmful and unpopular legislation.
TAKE ACTION
Contact your Senators NOW. We only have days to defeat this! Autism Society is co-sponsoring a national call in day on Wednesday, Nov. 29. Call your Senators. Use the Capitol Switchboard number 202-224-3121 and ask for your Senators.

Tuesday, November 28, 2017

National Call-In Day


Right now, Congress is trying to ram through their tax reform bill — and if it passes, it’ll be devastating to people with disabilities. We can still stop this bill from passing, but only if we take action together. This Wednesday, November 29, is a national disability community call-in day. We need your voice.
Here’s a recap of what the bill does:
  • Repeals the “affordable” part of the Affordable Care Act. Getting rid of the individual mandate means 13 million people will lose health insurance, and premiums will increase by 10% on average.
  • Raises the deficit, creating an excuse to slash Medicaid and more. The tax bill raises the deficit by $1.5 trillion. Congress’ proposed budget tells us exactly how they plan to pay for this: by cutting Medicaid and health care funding by between $1.3 trillion and $1.9 trillion.
  • Automatically guts vital services. If this bill passes, it will trigger automatic cuts to services and programs that many people with disabilities depend on, including food stamps, special education funding, and Medicare.
No matter what talking points come out of Congress, their end goal is clear: to give massive tax cuts to billionaires and corporations by decimating basic services that everyday Americans depend on. That’s why we’re participating in Wednesday’s national call-in day. Here’s how to join us:
Use ContactingCongress.org to find your Senators’ phone numbers. When you call, you can use our script below, and if you don’t speak, you can call using your AAC device, or get a friend to call in and read your message.

Monday, November 27, 2017

Self-Employment

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed efforts to provide them with training and experience

Clare Ansberry at The Wall Street Journal:
So, jobs are few for people on the spectrum, and adults with the condition have an estimated 80% to 90% unemployment rate. “One of the ways people choose to address this is by creating a business that allows them to be self-employed,” says Angela Geiger, CEO of Autism Speaks, an advocacy and support organization, which has a business-accelerator program.
By launching their own companies, people on the spectrum can create a work environment that fits their comfort level and doesn’t force them to navigate the traditional, heavily social office setting. Very often, though, their key to success is not to try for independence, but to build up a network of supporters who will help them with the business.
“It’s how interdependent can you get,” says Mr. Raede. “Try to get as many people you can rely on, not one. I want to have 10,000 people I know and can rely on.”
His online community is built on that concept, offering support groups and online courses to facilitate learning on a mass scale.
One of the best ways those supporters can help someone on the spectrum become self employed is to identify and build on their skills instead of trying to change behavior or have them do something they can’t, says Cary Griffin, co-founder of Griffin-Hammis Associates, a Florence, Mont., consulting firm that specializes in developing self-employment opportunities for people with disabilities. If a person can’t manage bookkeeping or marketing, for instance, others can.

Sunday, November 26, 2017

Ominous Tax Legislation


At The Hill, Peter Wilderotter writes about tax legislation:
The bill passed on Nov. 16 by the U.S. House of Representatives would eliminate a valuable deduction used by millions of people, including thousands with spinal cord injury, who face high medical bills.This allows taxpayers to deduct medical expenses for themselves and dependents that exceed more than 10 percent of their adjusted gross income.

...
About nine million people used the medical expense deduction in 2015 (the latest year information is available), claiming an estimated $87 billion in deductions.
This means that those who utilized the deduction — it’s only available to taxpayers who itemize their deductions — have extraordinarily high out-of-pocket health care costs. Additionally, many disabled Americans who file their own taxes may not realize the deduction even exists and, therefore, have not taken advantage of it.
For those who utilize it, however, the deduction is incredibly important to ensuring their financial well-being. The majority of those who claim the deduction have incomes of less than $75,000. They’re also the most vulnerable Americans: people already carrying catastrophic medical issues and the accompanying expenses, often with this deduction serving as the only barrier between them and poverty.
... 

Currently, small businesses can get a tax credit — the Disabled Access Credit — on any improvements they make to their facilities to make them more accessible. This credit has been vital for pushing back against (while providing a financial incentive to) businesses that claim it’s too expensive to comply with the Americans with Disabilities Act (ADA), despite having more than 26 years to become compliant.
The House bill eliminates this credit. Even worse, it comes on the heels of the House introducing legislation that would weaken the rights afforded by the ADA.

Saturday, November 25, 2017

Spacing of Pregnancies as a Link

Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:
Pesticides;
Air pollution and proximity to freeways;
Maternal thyroid issues;
Autoimmune disorders;
Induced labor;
Preterm birth;
Birth by cesarean section;
Maternal and paternal obesity;
Maternal and paternal age;
Maternal post-traumatic stress disorder;
Smoking during pregnancy;
Antidepressant use during pregnancy;
Another is spacing of pregnancies. From EurekAlert:
Investigators have found a link between the amount of time between pregnancies and Autism Spectrum Disorder in children. The findings are published in Autism Research.
Autism Spectrum Disorder was increased in second and later-born children who were conceived less than 18 months or 60 or more months after the mother's previous birth. Other developmental disabilities were not associated with birth spacing.
"These findings support existing guidelines on pregnancy spacing and further highlight the association between autism and pregnancy health," said lead author Dr. Laura Schieve, of the Centers for Disease Control and Prevention. "Couples thinking about getting pregnant should discuss pregnancy planning with a trusted doctor or healthcare provider."
And back to maternal obesety, also from EurekAlert:
A recent Obesity Reviews analysis of published studies found that, compared with children of normal weight mothers, children whose mothers were overweight or obese prior to pregnancy had 17% and 51% increased risks for compromised neurodevelopmental outcomes, respectively.
Pre-pregnancy obesity was linked with a 62% increased risk of Attention Deficit Hyperactivity Disorder, a 36% increased risk of Autism Spectrum Disorder, a 58% increased risk of developmental delay, and a 42% increased risk of emotional/behavioral problems.
"Like avoiding smoking during pregnancy, this review of over 40 articles suggests that maintaining a healthy weight during pregnancy may also be important to a child's brain development," said senior author Dr. Bernard Fuemmeler, of the Virginia Commonwealth University.

Friday, November 24, 2017

Texas Scandals Continue

In The Politics of Autism, I discuss special education.  Some states do a reasonably good job, but Texas has not been one of them. A 2016 Houston Chronicle investigation revealed that tens of thousands of disabled students  were refused access to services because of a de-facto enrollment cap.

Matthew Choi at The Texas Tribune:
The Texas Education Agency fired the state's special education director Wednesday amid allegations that she covered up a sexual abuse case at her previous job at an Oregon school district, the Austin American-Statesman reported.
The firing comes two days after The Texas Tribune reported that Laurie Kash, who started at the Texas position in the summer, was facing a $1.85 million civil suit from two instructional assistants at Rainier School District in Oregon. The lawsuit alleges that a six-year-old special education student told the plaintiffs she was being sexually abused by a high school boy but that Kash and her husband, superintendent Michael Carter, blocked them from reporting it to the authorities. After they reported it anyway, Kash and Carter harassed the plaintiffs in retaliation, the suit alleges.
The TEA said in a statement to the Statesman that the allegations were not disclosed during the hiring process for Kash and that they "prevent her from carrying out her duties effectively." The agency could not be reached for further comment Wednesday.

Thursday, November 23, 2017

Vaccine Update

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

FactCheck.org:
The Food and Drug Administration credits vaccines for the decline of many infectious diseases over the last century, and more than a decade of peer-reviewed studies show there is no link between their use and autism.
However, a story perpetuating the myth that vaccines cause autism has prompted several questions to FactCheck.org and has been getting popular on Facebook, where it was flagged by the social network’s users as potentially false. It is.
The headline on the story says: “NOW IT’S OFFICIAL: FDA Announced That Vaccines Are Causing Autism!”
But the FDA has made no such announcement, and the only evidence that the story gives to support its claim is the label from a vaccine called Tripedia, which was discontinued in 2011.
That evidence is pretty weak, since the label for Tripedia lists autism along with 10 other “adverse events” that were voluntarily reported by doctors or parents who had their children get the shot. Autism was not found to be among the effects identified in the studies of that drug before it went to market.
Julia Belluz at Vox:

While vaccine refusal rates have overall increased since 2011, they leveled off 2013 through 2016, researchers writing in the journal Open Forum Infectious Diseases found.
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During the study period, there were important legislative advances in vaccine policy, which went into effect after the study ended. In July of 2016, Vermont banished its philosophical exemptions, and California also did away with all nonmedical exemptions. [But note that some parents are getting dubious medicale exemptions. -- JJP]
Legislation in other states generally seems to be heading in a more pro-vaccine direction. One JAMA paper looked at the 36 vaccine bills considered between 2009 and 2012: 31 wanted to expand them, making it easier to opt out of vaccines, while only five wanted to make vaccine exemptions more difficult to obtain.
None of the 31 anti-vaccine bills passed, while three of the five bills clamping down on vaccine deniers made it through. So while there was more activity from the anti-vaccine side, public health has been winning out in state legislatures.
But there are refusal hotspots.
In Texas for example, between 2003 and 2016, there’s been a 19-fold increase in vaccine refusals — and it hasn’t leveled of lately. “We are still seeing an aggressive increase in nonmedical exemptions [here in Texas],” said Peter Hotez, a pediatrician at Baylor College of Medicine, “with at least 52,000 last year, up from 45,000 the year before.”
Texas is one of those lax states that allows parents to get both religious and philosophical vaccine exemptions (unlike Mississippi, West Virginia, and California). Researchers have continually found these more permissive places have higher rates of vaccine refusals — a trend that appeared again in the Open Forum Infectious Diseases paper. In the study, the rate of exemptions was 2.41 times higher in states allowing both religious and philosophical exemptions compared to those that allowed religious exemptions only.
Taking the much longer view, since the early 1990s, vaccine exemptions have overall been trending upward. In one 2009 New England Journal of Medicine paper, researchers looked at the state-level rates of non-medical exemptions and found that, between 1991 and 2004, those rates increased from less than 0.98 percent to about 1.5 percent. According to the new study, we’re now hovering above the 2 percent exemption rate, which translates to thousands more unvaccinated children than just a decade ago.

Wednesday, November 22, 2017

Disability and Sexual Abuse

Recent stories have detailed sexual harassment and abuse in politics, business, and other areas of American life.  People with autism and other disabilities are especially at risk.

In The Politics of Autism, I write:
People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.
Click here for resources from RespectAbility 


Research suggests that women with disabilities are more likely to experience domestic violence, emotional abuse, and sexual assault than women without disabilities.1 Women with disabilities may also feel more isolated and feel they are unable to report the abuse, or they may be dependent on the abuser for their care. Like many women who are abused, women with disabilities are usually abused by someone they know, such as a partner or family member.
In 2014, S. M. Brown-Lavoie, M. A. Viecili, and J. A. Weiss published an article in the Journal of Autism and Developmental Disorders titled "Sexual Knowledge and Victimization in Adults with Autism Spectrum Disorders."  The abstract of the study, which involved ASD people in Canada:
There is a significant gap in understanding the risk of sexual victimization in individuals with autism spectrum disorders (ASD) and the variables that contribute to risk. Age appropriate sexual interest, limited sexual knowledge and experiences, and social deficits, may place adults with ASD at increased risk. Ninety-five adults with ASD and 117 adults without ASD completed questionnaires regarding sexual knowledge sources, actual knowledge, perceived knowledge, and sexual victimization. Individuals with ASD obtained less of their sexual knowledge from social sources, more sexual knowledge from non-social sources, had less perceived and actual knowledge, and experienced more sexual victimization than controls. The increased risk of victimization by individuals with ASD was partially mediated by their actual knowledge. The link between knowledge and victimization has important clinical implications for interventions.

Tuesday, November 21, 2017

Buckeye Scandal Update: Wristbands?

In The Politics of Autism, I discuss interactions between police and autistic people.   Police officers need training to respond appropriately.  When they do not, things get out of hand.  

Recently, a police officer in Buckeye, Arizona, abused an autistic teen who was peacefully stimming in a public park.  Now the department wants to create a registry for people with autism and other disabilities.  They could wear wristbands so that police could more easily identify them. Dave Biscobing at KNXV-TV:
“I think it’s disgusting that you have to label someone with a disability with a special mark so they don’t have to live in fear from being hurt by police,” said Danielle Leibel, who told ABC15 her son Connor was traumatized during the incident.
“If my son were on a registry, how would that have changed this situation at all?” she asked. “How would that have kept him safe?"


Buckeye will give people on the registry a color-coded wristband according to their condition.
ABC15 obtained a copy of the registry application and the color codes.
“It sounds like an idea with good intentions but I’m curious to see how successful it is,” said Dr. Aaron Blocher-Rubin, CEO of Arizona Autism United.
According to information provided by Buckeye, the registry’s purpose is “to compile and maintain a list of individuals who have ‘Special Needs’ due to mental or neurological disabilities and who may reside or frequently visit the City of Buckeye.”
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“It publicly labels someone which certainly has some drawbacks,” he said.
Most importantly, Blocher-Rubin hopes the registry and wristbands don’t replace training and awareness.
“You would hate to see that it becomes an expectation,” he said. “Hopefully, this is just some extra thing to provide some help and not over time becomes an expectation to where police say, ‘You didn’t sign up, so how did you expect us to know.’”
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 “People with disabilities shouldn’t be required to broadcast their diagnosis to the world just because police officers have insufficient training,” said ACLU Arizona policy director Will Gaona. “I think a better solution would be to have special wristbands for officers who engage in excessive use of force so the public knows who they are dealing with.”